Patient and public involvement in health services and health research: A brief overview of evidence, policy and activity

Patient and public involvement has become a central tenet of health care policy, internationally shaping health services and policy (Department of Health, 2008). It reflects the goal of encouraging participative democracy, public accountability and transparency in society. The World Health Organisation’s declaration of Alma Ata states that ‘the people have the rights and duty to participate individually and collectively in the planning and implementation of their health care’ (WHO, 1978). Many European countries now involve patients and the public in decision making as part of the governance of health care systems (WHO, 2006). In the United Kingdom, there is now a legal obligation to involve patients and the public in developing plans and making decisions about local health services, with a duty placed on National Health Service organisations to involve users in planning services; in changing service provision and in decisions affecting the operation of services (Department of Health, 2007). In addition, policy has encouraged patient and public involvement in health and social care research, including nursing research. Organisations such as INVOLVE in the United Kingdom have been established to promote the involvement of users in all stages of research including the identification of topics, prioritisation, commissioning, designing research, managing research, undertaking research, analysis and interpretation, dissemination and evaluation (INVOLVE, 2004). INVOLVE encourage more active forms of involvement, such as collaborative involvement, where users are seen as active partners and may be involved in planning or making decisions about the research process, rather than just being consulted about a study or as a source of data. Internationally, interest in patient and public involvement is increasing, particularly around the potential for involvement in clinical research. The PatientPartner project was started in May 2008 by the Dutch Genetic Alliance, UK’s Genetic Interest Group, the European Genetic Alliance and the European forum for Good Clinical Practice. The aim of this 3-year coordination action will be to identify the patients’ needs for partnership in the clinical trials context rather than only rely on patients as subjects within research (http://www.patientpartner-europe.eu/ Accessed 10 March 2009). This distinction between different levels of involvement is an important one. Collaborative forms of involvement are thought to achieve better quality research, which might lead to better quality services (Smith, et al., 2005). Some research funders in the United Kingdom request that researchers specify how they involve users in a study and indicate the level of involvement. In future such funders may monitor the outcomes of user involvement. Like others, the Health Technology Programme in the United Kingdom has developed guidance on patient and public involvement and evaluated the extent of public influence in the NHS Journal of Research in Nursing ©2009 SAGE PUBLICATIONS Los Angeles, London, New Delhi and Singapore VOL 14 (4) 295–298 DOI: 10.1177/ 1744987109106811 GU E S T E D I TOR I A L